Down Syndrome Kids Struggle Against War

A horrible missile strike on a busy downtown of Vinnytsia shook the whole of Ukraine, the city was shelled with “Kalibr” cruise missiles, as a result of which 26 people died, including 3 children.

The hearts of Ukrainians sank when they learned the tragic story of the little three-year-old girl Liza, who died during the Russian attack. On the day of the shelling, July 14, Liza and her mother went to a speech therapist’s class, returning from which she died so tragically. The girl had Down’s syndrome; at the age of six months, she underwent a major heart operation.

“She took the most beautiful from the two of us. Because she was born in love and was the most desired child. From the 14th week of pregnancy, when the heart defect was diagnosed, we loved and believed so much. And we promised that she will have the happiest life! And we will never, never leave her!!! How could be different/otherwise? There is no other option for me. There is only one – unconditional love, daily work, and infinite faith! I’ve always dreamed of a princess with long blond hair and brown eyes. My favorite eye color. My Elizabeth,” says one of the posts the girl’s mother, Iryna, left on her Instagram page.

Iryna (the child’s mother) was also seriously injured during the attack and is now in the hospital. She has an abdominal wound: her liver and lungs are damaged. According to the girl’s grandmother, Larysa, immediately after the missile attack, Liza’s mother called her and told her that her daughter had died. However, the woman does not remember saying that at the moment. The doctors forbade to tell the truth about the daughter to the patient, fearing complications.

The organization “Down Syndrome” reported that no one expected that the news feed would bring such grief to the family of this community. “The fact that this is a small, innocent child causes the greatest anger and pain. Our child. Our little Lisa,” the organization’s post reads.

Hundreds of town residents came to pay their last respect to the girl, carrying flowers and children’s toys. People knelt down and asked Lisa for forgiveness for not being able to save her. Both relatives and complete strangers, who learned about the tragedy, came to the last farewell crying.

The wife of the Ukrainian President, Olena Zelenska, addressed the US Congress in Washington during her official visit to America. In her speech, Zelenska told the story of children killed by Russian missiles, including 4-year-old Liza. “This is a girl Liza. I met her before Christmas when we were preparing a congratulation video for the children. I remember her just like that – a little playful scamp. And this video was made by Lisa’s mother, her name is Iryna, when she was taking the girl to class, she asked Liza: “Where are we going, bunny?” The daughter calls the name of her beloved teacher. She was 4 years old. Not anymore. Here’s a photo of the stroller… And this ‘Where are we going?’ has been ringing in my ears for six days now,” she said. Usually, the presidents’ spouses are engaged in peaceful affairs – education, fashion. I think you were expecting a speech about this. But how can I talk about them when there is a war of conquest against my country?”

The war became an upheaval for Ukrainian society and a real challenge for all children with Down syndrome.
Children with special educational needs find it difficult to understand in detail what is happening around them. It is hard to adapt when their usual world is crumbling before their eyes: they are separated from their friends, they are forced to flee from shelling. And it is even more difficult for parents who have to provide special conditions for them, occasionally hiding with their children after the sounds of alarms that warn of a new missile threat.

The parents explain that the first challenge was to learn to live with the war: to explain everything to the children, to give them a sense of security, and to help them accustom to a certain algorithm of actions necessary in war conditions. As they claim, a set of rules builds a safety zone around the children, as they clearly understand what should be done. Permissiveness breeds anxiety. Therefore, in the case when the air raid siren goes off, it is important to teach the child to react less emotionally and follow the plan.

The story of 12-year-old Diana from Lviv is illustrative, her mother says: “When we are at home, even in the middle of the night, and the air alarm goes off on my phone, we calmly go to sleep on the mattresses in the corridor…Of course, we had to repeat and explainat least 350 times that it is safe. In order for Diana not to be capricious, she must understand what is happening and why she should act this way and not otherwise.”

In the first days of the war, it was difficult for Yuliia Aronova to correctly and understandably explain what was happening to both children: her neurotypical son Luka, and Diana with Down syndrome. After all, she and her husband, like everyone else, were in a state of shock. “In order to explain everything to a child, one must understand what is happening at first and then translate it into the child’s language. In the first days, the only thing we constantly repeated was “Everything will be fine! We are together,” recalls Yulia.

During the war, it is especially important for a child to trust his parents. Their peace depends on it.

The second challenge is education and socialization. Some schools and teachers work remotely, but this is not enough to completely replace the effect of live communication or all the hours needed for all-round development.

For Diana, it is especially difficult to understand why her favorite holiday – her birthday – did not take place due to the war. Now she occasionally asks her parents: “When will my holiday be?”. And then she answers herself: “Yes when the war ends.”

When Diana cries, everything she lost because of the war is in these tears,” says mother Yulia. “School, friends abroad, mobility…”

Another kind of situation is experienced by the people in the occupied territories. Iryna Khanikova, head of the public organization “Sunny Children of Kherson Region”, which unites 50 families around the region, reports that among all the problems faced, the financial one is the most acute. Almost all families which are members of the organization stayed at their homes. There are families where only one person makes a living. In some families, the parents became jobless due to the war. Almost all children need special food or medicine, which is currently impossible to get. Many families had to cut their rations due to high prices. A serious problem is the kilometer-long queues for food or water, which are almost impossible to stand with children. The humanitarian crisis, artificially caused by the Russian Federation, undermines the ability to support children’s lives with basic food products at the pre-war level.

Despite the troubles, each family living in the occupied territories supports each other.

We communicate every day and exchange the information we have. Our inclusive theater studio continues to work. We switched to online mode, but we continue to meet with children. Every day they receive homework from the leaders, and the next day for an hour they learn to dance, learn poems, remember what we taught them before, draw, and discuss various topics.”

All around Ukraine kids with Down syndrome and their parents face the hardships of war and try their best to move on with life. Though being under constant threat Ukrainians continue the brave fight for their kids both on the frontline and at home. If you feel the desire to help, please donate to the local Ukrainian organizations, uniting the families who care for their kids in these tumultuous times.